Friday, February 28, 2014

Yesterday was one of those days -- this week has been one of those weeks -- when the post-chemo exhaustion catches up with me and knocks me square on my ass, when the steroids (or my hormones) make me weepy (highlight: my yoga instructor played "Stand by Me", my and Chris' wedding song, in class the other day, and I was sobbing in down dog), when it feels like a struggle to get out of bed, let alone play with Quinn or do laundry or pour myself a bowl of cereal. I must have an amazing ability to forget how wiped out each treatment makes me, because all of this never fails to surprise me. Chemo-nesia? Something like that.

Part of it -- a large part of it, actually, I think -- is that the steroids I'm given with my infusion keep me up well well well past my bedtime, my mind and body buzzing like I drank a quadruple venti mocha with dinner (the only time of the week I have any energy). I got four hours of sleep Monday night, which is not nearly enough. Then I spend the rest of the week trying to play catch up, and I am too old for this shit.

***

Did I mention our house is under construction? We're turning our one-car garage into a mother-in-law suite and building ourselves a two-car garage. Well, the construction guys are building it, and it's coming along at a pretty decent pace, from what I can tell. This week they're working on framing the roof.

He'd rather watch Rescue Bots (which he calls "Rethcue Botsth to the Rethcue") on his iPad. Because I'm gunning for parent-of-the-year-award (they still give those out, right?) we spent all day Tuesday on the couch watching tv. I couldn't do it again yesterday, not with the incessant ham-ham-hammering going on above our heads, in my head.

***

A friend swooped in and saved my tired butt offered a play date at her house, and it was exactly what Quinn and I both needed. We may have overstayed our welcome (although I hope not). Quinn spent five hours running around their football-field-sized backyard, jumping with his friend on their trampoline, driving a "monster truck" until it ran out of batteries, until he ran out of batteries, too. Also? We've potty trained, so who needs pants when it's 75-degrees outside?

Somehow, parenting is a million times easier with two moms around. Math would insist it should be twice as easy, but no. A million. We visited lazily, the boys were happy, and Quinn came home as pooped as I was last night. It was glorious. And, finally, this week is coming to an end.

I've always liked to cook, liked the process of combining ingredients into something greater than their parts. I might not be any good at chemistry, but I can bake, dammit. And I'd always prided myself on making a decent chocolate chip cookie--until I met Chris, that is.

Chris' grandmother had been famous for her cookies. At Christmas, she didn't just make a few varieties and leave it at that, the way the rest of us mortals do. Instead, as the story goes, she would bake for days, making seventeen different varieties of cookies to share for the holidays. In the neighborhood where Chris grew up, her cookie plates were a highlight of the season.

I couldn't compete with that. My cookies were okay, Chris told me, but they just couldn't hold a candle to his grandmother's. (I had to woo him with my genius wit instead.)

He told me the key was to refrigerate them overnight, and I scoffed at the idea. Who plans ahead for cookies? They'd always been a thing I'd decided on last-minute, when I had a hankering. That was the beauty of chocolate chip, I thought. It was a cookie that could come together in an hour, tops, when you had a craving for one.

But then I stumbled across this recipe (I'm telling you, everyone else on the Internet is craving chocolate chip cookies, too). So I gave it a whirl. Lo and behold, the cookies were heavenly--chewy, full of toffee flavor, and with the addition of a sprinkle of sea salt on top I may have even tied the score with Grandma. It only took nine years.

***

I can't blame the lousy winter weather on why I'm craving cookies. I don't have much of a sweet tooth. I'm certainly not pregnant (although they tested, just in case). And I'd be freaking out so much more if I hadn't just had a clean scan. There may be one other explanation: PMS.

I have essentially been on my period since mid-December. (TMI? Maybe...) That's two months, folks. While I am so very happy that chemo hasn't put me in permanent menopause, I am really tired of ruining pants, doctors appointments with no answers, not to mention cramping and crankiness and headaches and bloating.

So far, the bleeding hasn't made me anemic. Which is great, since it means I can still get chemo. Luckily, we were able to get things under control with a ten-day course of progesterone that my oncologist approved (I was shocked). And yet, my uterus is still shedding.

I have my third meeting since Christmas with my gynecologist this week, to try to come up with a solution that my oncologist will be on board with. The go-to choice for regulating periods, birth-control pills, is not an option for me because of the hormones. Another possibility would be a hysterectomy, although I really don't want to lose another body part to this disease. I'm hoping we can find some middle-ground.

***

In the meantime, I'm going in for more cookies. I don't know why, but they help.

Tuesday, February 18, 2014

Chris and I started watching Season 2 of House of Cards last night, and there was one line of dialogue where a guy is talking about grief after losing his wife (not a spoiler, I promise). He says something along the lines of, "I mean, who dies of breast cancer at 31?" Chris and I both laughed awkwardly. It isn't funny.

But it means that -- little by little -- word is getting out about the possibility of death from breast cancer at a young age. It's mentioned in a Netflix TV series, for crying out loud! Maybe, little by little, people are waking up to the reality that this disease is not a "good" cancer, not all pink and happy, not something to be trifled with or taken lightly.

In that vein, I want to do my part to give some recognition to metastatic breast cancer. That's what this blog is about -- shedding some light. But this blog is not quite enough. So I wrote this piece, which was published here. Please take a peek.

I don't know why I'm so nervous to share this here, but I think it relates to how weird I feel about self-promotion. But then, I think if I really want to be brave, I should tell my story to anyone who will listen. I should find as many outlets for it as possible and then do my best to make sure it reverberates.
I hope you'll help me by sharing it far and wide. Shout it from the proverbial rooftops.

Wednesday, February 12, 2014

We got the news this week that my chemo is still working. My PET/CT scan was clean, which is remarkable. There are no signs of malignancies in my body for the second scan in a row. When my oncologist told me the news, I sobbed with relief. Because no matter how much yoga I do, these scans still put me on edge.

The last time I had back-to-back clean scans, I was ending six grueling months of super-toxic (technical term) Taxotere. My fingernails were barely holding on, and I'd said good-bye to my eyelashes and eyebrows months before. But a clean scan meant a break from chemo, and I'd been certain I'd see a long-term remission on maintenance drugs alone.

Just four months later, though, cancer proved that line of thinking wrong. In May 2013, I started TDM-1/Kadcyla, a targeted treatment that's been called the smart bomb of chemo. Every new treatment brings anxiety and trepidation. How would the cancer respond? Would the side effects be tolerable? And, yes: would I lose my hair again?

I'd heard rumors of women being able to stay on this particular drug for years at a time, but didn't quite believe it could happen. Cautiously, I'm starting to feel optimistic this could be me, too. The side effects are tolerable (even if my chemo brain is out of control). I've kept my hair. And most importantly, this drug is working.

Wednesday, February 5, 2014

I knew I was supposed to have chemo this week, but I couldn't for the life of me remember what time it was scheduled for. So just after 8 a.m. on Monday I called my oncologist's office to find out, and it turns out I'd forgotten to make the appointment at all. Chemo brain strikes again.

Luckily, they were able to squeeze me in on the infusion schedule in the early afternoon, which also gave me time I wouldn't normally have in the morning to make it to a yoga class. Nothing like a little getting centered (or heavy stretching, as Chris calls it) before poison--ahem, chemo. THIS is what I do with my days, you guys.

And side note, I have a scan next Monday. As much as I'm trying not to be anxious, I'm still a little on edge this week. Pre-chemo steroids don't help. (They don't call it 'roid rage for nothin'.) But I didn't realize how on edge I was until yoga on Monday.

At the beginning of class, my teacher started talking about how yoga is a spiritual practice as much as a physical one, how we come to our mats to create space for good as we release what's no longer serving us--physically, emotionally, or spiritually. None of this is particularly new or earth-shattering, but then he began talking specifics. How feelings of fear or guilt or anger or jealousy can take root wherever there is an absence of love. "So," he said, "the way to drive those emotions out is to breathe in love." Easy for you to say, I thought. You don't have a PET scan next week.

I was irritated with the idea and found myself actually getting angry. What was I supposed to do? I thought. Send some love to my scarred, radiated chest that won't move the way I want it to? Feel love toward my never-ending appointments, scans, and follow-up visits? Love cancer? As I began to move through the postures, though, to stretch and strengthen my body, to marvel in what it could do, I realized my instructor was on to something. As I began to sweat, as my muscles burned in warrior pose, as the familiar calm began to seep in, I realized how frayed my nerves were and how much these scans still hijack me--yes, physically, emotionally, and spiritually--in the days leading up to them.

As much as the stubborn side of me didn't want to admit it, it does help to be more loving with myself. And wasn't that what I'd resolved to do this year, anyway?

I don't have quite as much flexibility in my right pectoral muscles as I do on my left side since I had four lymph nodes removed and five weeks of radiation. But slowly, muscle fiber by muscle fiber, the scar tissue is breaking up and poses I'd figured were out of reach for me are becoming available again. The pain is lessening (although there is still significant discomfort, but I have learned to tell the difference between the two) and my range of motion is improving.

It doesn't take away the fear or anxiety completely, but coming to terms with my body, appreciating it for its strength and--yes, sometimes even grace--helps me accept the scan next week, helps me find peace with where I am today, helps me forgive all that my body and I have been through the last two and a half years.

As we relaxed in shavasana at the end of class, my teacher reminded us to let go of fear, and I realized maybe it's not so easy for him, either. I don't know what struggles he's up against. We all have our burdens to bear. I don't know what anyone else is bringing to their mat. I only know that every time I come to mine I let go of a little more of what holds me back.

Yoga can't help me control what my scan will say next week. And I don't know if my chest muscles will ever open up enough for me to get into king pigeon pose.

Welcome

Writing about my journey at the intersection of metastatic breast cancer and motherhood. Diagnosed with Stage 4 cancer at age 32 and when my son was just five months old, this is the story of how I've learned to take life one day at a time -- through treatment, potty training, and, eventually, recovery.